At this important time, I encourage others to submit articles of interest - such
as the letter I have forwarded - regards to the Online Consultation: Convention
on the Rights of Persons with Disabilities.

- VM



June 26, 2009


Acting Director General
Office for Disability Issues

Human Resources and Skills Development Canada

Attention: Laura Oleson,

consultation@...



Online consultation: Convention on the Rights of Persons with Disabilities:
http://www.hrsdc.gc.ca/consultations


Emphasis on the importance of listening to children and youth in care has been
hi-lighted for its value; views bear significant weight on matters pertaining to
decisions made in respect to individual's lives. Alas, lapse is identified
amongst a neglected group who are not given similar consideration to principles
and values - which, in turn, infringes upon very basic human rights - those
individuals with developmental disability.

The recent 755 page Annual Report issued by John Mould to Minister Tarchuck -
Child Youth and Family Enhancement Act, Matters to Be Considered - consist of
issues which bear further expansion regards to inclusion and reference to
individuals with disabilities. Source:

http://www.advocate.gov.ab.ca/547.html

While I speak on behalf of scores of families in saying that I am pleased that
due to our child's individual case, Policy has been Amended to define separation
of children with disability from those need of protection, if we do not truly
follow-through with strategies needed to implement change, Amendment remains,
but an empty promise and does not offer viable solution.

Specifically, I am referring to Manual amendment in the Family Support for
Children with Disabilities (FSCD) Act of 2003, section 2.3. Effective December
2006:

http://www.child.alberta.ca/home/527.cfm

"The Family Support for Children with Disabilities (FSCD) Program to have
separate legislation from that of child protection services."


Amongst solid caseworkers that I have personally the pleasure of interacting
with; those who seemingly have a vested interest in children - emphasizing value
of the child's needs in decision-making - they, too, are often at a loss when
considering the input of persons whose communication skills are limited by
disability. In example, "It is not as if I can just ask her what she wants".
This was an exchange by a senior caseworker regards to the child who was mainly
non-verbal. That is an attitude which is both archaic and inaccurate!
Individuals with limited vocabulary are still able to provide honest reflection
towards their needs and desires. That is where we must depart from traditional
thinking and truly implement strategies which support separation of those with
disability from children in need of protection in order to satisfy effective
solutions of personal needs. One suggestion is to incorporate the input of
front-line services providers such as rehabilitation agencies and hospitals
which deal on a daily basis with clients who have unique medical and
developmental issues. Inclusion of human rights groups, teachers and parents who
are able to present a more accurate concept of a Family-Centred Care approach.

If we visit perspective of those who can justly interpret the needs of persons
with medical and developmental differences through experience and offer methods
which allow freedom of speech to exist, many positive aspects can emerge. One
would be amazed at how well persons with very limited vocal skills are able to
express positive and negative response to choices! Simply because an individual
may be developmentally delayed does not negate ability to assist in the
decision-making process. Receptive skills are often much more acute in
individuals than expressive limitations present outwardly... It is our duty to
find methods which honour human rights in members of our society who struggle
with skills that those without developmental difficulties take for granted...
such as the case with expressive speech. The child, for instance, who utilizes
sign language to indicate that she is being "hurt". Yet, how many social
workers are apt at interpreting ASL? Training and hiring of individuals with
skills of translation are necessary to represent groups of children who do not
use more conventional communication methods.

Inclusion of all individuals in society as valued members remains a novel
approach to some who have not been privileged to know and love a person who may
be viewed "differently" from the norm. Therefore, resulting reaction by
Officials is often an inappropriate reflection of basic consideration of human
rights. Recent experience found a Government Representative within Justice
Alberta describe a child with a chromosome disorder as a person who "suffers".
That view - as anyone who has contact with a person with disability or
developmental difference - would confirm is not necessarily true. An individual
though delayed, more often than not are typically described by people who
interact with them, as a person with a "happy-go-lucky" disposition. It is
ludicrous to surmise that one "suffers" simply because of a developmental delay!
Furthermore, that same Representative went on to refer to the individual as
"it", dehumanizing the person completely! I am abhorred - in particular that a
Representative of the Government of Alberta would state such an ignorant remark
- and this is the sort of archaic thinking that, we, Society, must combat
against and bring awareness towards so that celebration of diversity is embraced
and rights of all individuals may be secured. It was not too long ago that
Activists such as Rosa Parks needed to stand up and protest against
inappropriate actions that stemmed from historical prejudices. I feel that much
inappropriate reaction arises from lack of exposure and subsequently translates
to inhibit what is constitutionally, fundamentally and morally correct. I find
it ironic that even amongst younger generations than I, people need be
introduced to concepts that seem self-evidentiary. However, I was blessed to
have learned insight directly from the people that have been in my life: We are
each valuable and productive - and matter - despite outward appearance. That
premise aside, it is the responsibility of those who service children in their
role as protectors to become increasingly aware of new trends and outlooks and
to embrace change so that all individuals are able to benefit from increased
vision. Change in attitude not only benefits those we endeavor to include, but
we, in turn, learn much from those who think and see the world through diverse
perspective.

Society is presently ill-equip to deal with diversity. I have found in having
been a parent to a child with disability and in speaking with other families
that similar challenges exist in how we are regarded by others and situations
responded to. Mostly, I feel it is lack of understanding that comes from
exposure to situations and differences. Personally, I had no previous experience
with understanding the issues surrounding daily life as a person who would come
to advocate for basic human rights on behalf of others. It was only through
direct experience that I was afforded such insight. I was equally devastated to
be informed of my child's prognosis having had no prior exposure while growing
up to others with differences in our community. The initial reaction is much a
grieving process and for some, such as myself, it took a long time to find peace
and acceptance, but as I came to know my child, it was most obvious that despite
delays, she was a beautiful, mischievous, funny, sweet and loving soul. She was
no less important than any other being. As a matter of fact, oh, how much she
has taught us all! I am very proud to have been Samantha's mommy!

Being Samantha's mom has been so much of a journey of growth: When our daughter
was born in 1993, we were given the most dire prognosis. I remember as if it
were yesterday being in the office of the genetics' clinic and receiving the
diagnosis of rare genetic syndrome. As is often the case with less known
disorders, there was no information available and the lone piece of literature
the specialist could offer was a photo-copied page from a text-book: As the
information was handed to us, the doctor apologized for what was written in the
literature was a list of physical markers and a prognosis of development...
"Imbecile". The word leapt from the pages at us to cheat us of all resolve. We
had prepared for almost every scenario that our daughter might face - inability
to walk, see, talk, have children of her own - but, to fathom that our daughter
would not realize who we were, that destroyed us (and, by the way, turned out to
be completely inaccurate!) To compound matters, in effort to help, the clinic
sought out the counselling services of - previously known - HCS (Handicapped
Children's Services). However, instead of offering direction to secure help for
our child, the caseworker, indicated that as a young family we could not
possibly meet the demands of our little girl's anticipated needs. That the sole
way to secure assistance would be through an out of home placement where funding
and services could be provided within foster placement. The archaic view at the
time was to place children with disability outside of their homes and community
and fund alternate care-givers rather than natural family. While our experience
occurred in 1993, to this date, families still come forward seeking to avoid
such oppression. Solid, loving families of children with a variety of
differences, Autism, for instance, who are informed that they must relinquish
guardianship of their child on a temporary/permanent basis to achieve help. It
is unconceivable, and yet, reality for many!

You see, that is how I can to take such a strong stance on the importance of
solidifying Family-Centred Care practise. These, are all gifts that my children
have taught me. I've never been a loud voice, but I am certainly a determined
one. When injustice surrounds others, as it did our family, I feel it is my
obligation to return the gift that Samantha taught and challenge inequities.
There are too many individuals who lack the skills to adequately advocate for
themselves and it is our duty as Society to teach these to others so that they,
too, can become strong.

While it is commendable that Ministries are at last taking a look at strategies
to avert over-lap of children with developmental needs from being grouped
amongst - and confused with - those individuals who may require protective
services, without creating a new Office and distinct Policy which over-sees
those persons accessing Government supports, true separation cannot exist. Many
workers still operate on a child intervention model when approaching families of
children with disability which negates the true reason that Government support
is required... Disability alone! Take for example, the outlook of the Manager
representing Children's Services who remarked towards the child with disability;
that she could not possibly ask her opinion... "Why?" I inquired. We need to
employ social workers who have familiarity with persons with disability and true
understanding that despite outward appearance of deficit, individuals each have
the same needs whether neurotypical or developmentally challenged to express
opinions - and, the right to be heard! Caseworkers, many of which are already
disillusioned by the abusive situations that they have witnessed, must naturally
become seasoned to shut down emotions in order to survive the tragic
circumstances encountered on a repetitive basis to perform duties. These same
individuals must not be trusted to represent the needs of children with
disabilities and their families because no comparison within the two groups
exists.

Children with disability are a distinct group that require legislation and
personnel to monitor Governing of Services... That is not to dismiss or deny
that situations may develop where over-lap of children with disability are
maltreated; any such instances should be dealt with accordingly, but we are
strictly discussing those families who access services and funding for
disability. We must regard the fundamentals of human rights by supporting solid
natural families who - without any issue of abuse or neglect - require
assistance for their loved one. We must nurture and respect the loving relations
that exist amongst natural families supporting individuals with extraordinary
needs with means that are least disruptive to the family unit. Involve input of
rehabilitation agencies and hospitals alongside Family Services for Children
with Disabilities (FSCD) to empower natural families through education and
strengthen ability to self-advocate when seeking assistance. Help cannot come
at the expense of the family unit; nor through inhuman requests to surrender
guardianship to achieve it. Natural families of children with extraordinary
needs are already facing emotional and financial challenges without being
subjected to fear of collapse of the family unit. That individuals step forward
courageously to inquire how best to support their child and stabilize family,
must not result in being penalized and stigmatized by the umbrella of Child
Protection Agency Practice.

Joint ventures must include correspondence amongst Governing entities, such as
Supports within Aids to Daily Living and the Ministry of Transportation to
ensure that each Department is aware of current affairs and working
constructively to avert overlapping problems. For instance, penalization of
recipients of devices which disappear and remain unaccounted for if an
individual resides in a foster placement... The person who requires access to
equipment - in many instances - is unlikely able to return needed items on their
own, but depend upon the sources that signed for the equipment in the first
place to fulfill obligation to do so on their behalf. By the same token, the
person who takes on the responsibility for signing out of aids on behalf of a
person in need, must be accountable for its subsequent return; thus, the client
does not go without needed equipment if it is retained by others without their
consent or knowledge. Clearly serious deficits exist when one Ministry is in the
process of internal review of an individual while another is allocating funds to
the same entity under scrutiny.

Where a number of references have been made to increasing funding for out of
home placements and foster care, including recruitment and retention strategies,
I find no similar allocation offering assistance towards natural families to
maintain the family unit. No slight is intended towards those individuals who
offer genuine care and affection for children through foster care, which is an
unfortunate consequence when commentary is aimed towards those representative of
placements who do exist which are over-burdened and/or utilizing their
significant role incorrectly as a method of income without vested interest in
the child(ren). Differential treatment of children can and has arisen within
fostering support of children who enter into a family constellation and this is
an inappropriate, offensive, unacceptable guise of "care". Continuous review of
a child's needs in out of home placements must be revisited and if and when
change is deemed necessary, an action plan formulated and follow-through must
occur. The foster care system is strained and over-laden by vast numbers of
individuals who are incorporated into the system without adequate reflection on
evaluating their status and competency; particularly, children with medical and
developmental disability.

Barring obvious constraints in mind, maltreatment and neglect of a child in care
cannot be ignored and a Foster setting that abuses its authority by intimidation
of caseworkers and natural families are not fit to maintain status. Statistical
evidence indicates that less monies are required to maintain a child with
developmental needs under Guardianship of the natural family than it is to
employ a foster placement to provide care... At times, out of home placements
are, indeed, required and warranted - whether on a temporary or long-term basis
- but maintaining inclusion of natural family is certainly in the best interests
of the child. All children are individuals and although a model must exist on
which to base premises, so too, must we distinguish individuality and support
the needs of the child on a case by case basis. Less intrusive means other than
relinquishing guardianship to the Director has beneficial outcome for all
involved in dealing with children with complex health issues. Therefore, in
discussing permanency, it is important to emphasize the fact that it is much
more sensible to support the natural family unit by primarily increasing
services and funding to this core group.

One of the duties of the Office of the Child and Youth Advocate (OCYA) is to
involve the Public and families in advising the Ministry of Children's Services
of defects in the system and make recommendations to correct deficits. It is, as
well, the duty of the Advocate to respond to complaints and submit these to the
Minister and this, in itself, is a contradictory practice. Similarly, while
recommendations to the Minister outline warrant of citing constitution of
maltreatment of children in care to allow definition to be enforced, this does
not suffice. In the meantime, while strategies are developed, children continue
to be maltreated and abused. The role of the OCYA is to represent children's
best interests, yet is not provided with ability to strategically intervene and
offer critical suggestions that can be incorporated into Governing of individual
circumstances at critical times. Timeliness is a vital feature in promoting
protection of children. No valid reason exists in prolonging action where
confusion over interpretation of abuse exists. There are standards that have
been set that clearly outline factors constituting maltreatment and no one
should be free from accountability where there is documented evidence of its
existence. While a deficit of quality foster care providers exists, this does
not negate responsibility to act upon reports of maltreatment of youth and
follow-through to prevent further damage. As per consensus of the OCYA, too many
youth are languishing in inappropriate living arrangements.

Further, there is no acceptable standard for clarifying the importance of
distinguishing care-giver's roles: Medical and educational documents must be
maintained; to be absent or missing from a child's files is unacceptable. It is
the responsibility of the guardian to maintain these and should the Director be
granted provision of Guardianship, certainly that same entity is under legal
obligation to secure and maintain these on behalf of the youth. As pointed out,
reporting between Educational (as well as Medical Agencies) and Child Welfare
Authorities are missing key opportunities to coordinate efforts to involve one
another. Absence of awareness exists between Schools and Medical Institutions
towards Legal Authority on very basic and vital issues. This ranges from simple
matters such as the authority to grant permission for everyday field trips to
more major decisions such as allowance or denial of administration of drugs - or
- even a medical procedure! Negative associations exist in the Public's
perception of those individuals who seek help for their loved one when services
are allocated under the same frame as Child Protection. Negative attitude is not
limited to the general population, but transmits to those of caseworkers;
supports need for creation of an entirely separate provision of status for
individuals accessing services for disability alone under new terminology apart
from the Ministry of Children's Services. Active participation across the
humanities will not detract from accountability, the more input, the better a
chance we have of promoting awareness and ability to maintain the child's needs
first.

While freedom to protect information is a component that must be considered and
honoured wherever possible, it cannot replace the essence of core protection
issues; particularly when addressing the health of vulnerable persons. Thus,
electronic medical records do need be in place to ensure that similar services
and treatments - for injury, for example - are not being rendered to the same
individual at differing facilities. Electronic reporting would ensure that such
scenarios are better flagged by personnel who can take action to report to
Officials where follow-up must be embarked immediately to avert harmful
conditions. Breakdown in communication exists between the Director and OCYA:
Inability of the Office to fully express an honest depiction of inadequacies
that have and do arise in the system. As well, inability to institute formal
decision-making authority. It is a limiting factor when OCYA is assigned to
review complaints, but is unable to respond constructively. Whether there is
fear of retribution for allowing indiscretions to surface - which have arisen
under Ministry Direction - surely compromise can be found in which
accountability can co-exist alongside the premise honouring best interests of
the child. Mistakes are human, but continued transgressions in the face of
enlightenment continue to plague the Child Welfare system and this is
intolerable. It is this inaction which is preventable with full disclosure.
Deplorable acts of Leadership cannot be dismissed. Ownership for transgressions
must arise and consequences visited.

Recommendations that are made to the Ministry benignly must be openly
regarded... It is with the tragic outcome of individual experience that lessons
are learned and preventive measures offered in effort to avert future discord.
The Ministry need recognize the input of families' strength of conviction to
come forward to assist with sincere appreciation of these efforts. In order to
Minister with transparency, the OCYA must be able to report beyond the Ministry
and to do so without limiting honest portrayal of Government inadequacies.
Effectiveness is lost if a reporting entity is unable to do so unless
encouragement of diverse representation of issues is enforced, including
criticism of current practice. The United Nations Convention on the Rights of
the Child further supports the need to focus on the best interests of the child,
thus, for similar reasons, litigators who represent the child should be separate
from those employed by the Government of Alberta to perform duties; there must
be fair and impartial response to issues aside from conflicting interests that
arise.

The OCYA, itself, proclaims need for Public involvement in expressing its view
towards the very issues that plague us here in Alberta - not restricted to
Provincial territory - but, continue across each Province, State, and Country.
Take heed and respond to plea for promotion of Advocacy on behalf of vulnerable
individuals who deserve accurate representation of needs and enforcement of
distinctive Policy. Meaningful solutions arise with active interest stemming
from establishing a distinctive effort to combat deficits by viewing matters
constructively with honest exploration. This must include delegation of
Authority for decisions allocated to Advocates who can openly respond to
concerns amongst the persons they represent. Specifically, the OCYA, who also
represent children in care with medical and developmental disability.
Communication is key and ability to offer perspective impartiality is
imperative.

Sincerely yours,



Velvet Martin,
Administer for Tetrasomy 18p Canada

(\ -- /)
( \()/ )
( / \ ) TAKE THIS LITTLE ANGEL ^j^
(/\/\) AND KEEP HER CLOSE TO YOU
/ \ SHE IS SENT AS A GUARDIAN
(____) TO PROTECT ALL THINGS TRUE

"Samantha's Syndrome"
http://www.tetrasomy18p.ca/